Registry integration and sex-disaggregation

Sex-disaggregated reporting, together with Nordic OMOP phenotyping for women’s health conditions beyond pregnancy, would extend Nordic data federation to PCOS, menopause, female cardiovascular sex differences, and female mental health, and would align with the Nordic women’s health data dictionary advocacy in R-D-1 going into EHDS implementing acts. Nordic quality registries currently aggregate by sex rather than reporting by sex. The 2025 OMOP perinatal expansion mapped over 740,000 pregnancies. Beyond pregnancy, no validated Nordic OMOP phenotype exists for the four condition clusters that carry most of the female disease burden.

The EHDS implementing acts deadline of 26 March 2027 defines the window for Nordic advocacy on women’s health variables in European data dictionaries. A coordinated Nordic phenotyping programme, extending the OMOP perinatal methodology to the four missing condition clusters, with sex-disaggregated reporting as default across Nordic quality registries, would let the Nordics carry concrete women’s health variables into the EHDS conversation rather than memos. Region Stockholm’s SNOMED CT maternity work, presented at the SNOMED CT Expo in Antwerp in October 2025, is the cleanest Nordic terminology reference.

The international reference no Nordic body has yet matched is the European Society of Cardiology’s (ESC) operational advocacy specifying PCOS, adverse pregnancy outcomes, and pregnancy loss as female-specific cardiovascular variables. The strategic value is that R-D-1 lands as an evidence-backed Nordic position. Sundhedsdatastyrelsen in Denmark, Findata in Finland, Helsedata in Norway, SND in Sweden, Landlæknir in Iceland, Sitra and VALO2, and NordForsk are positioned to coordinate it.